Worry about meeting the consultant on Monday

User

Posted 21 Jul 2022 at 08:15

The surgeon is a urologist

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Aug 2022 at 10:38

Hi all, having a Telephone conversation with the urologist 5th Sept.

to get the 1st psa test result and info if any change in staging or Gleason. OH told me that just as he was wheeled into the operating theater he was told they may not be able to do nerve sparing due to space issues.should that not have been checked ealier and he been told about this?

Also the ED nurse prescribed cialis for erections as far as I am aware that only works if nerves are present. Should she not instead offer muse or somehing like that as a start?

Or do they start with the cheapest option and let the patient get discouraged to go away

User

Posted 12 Aug 2022 at 10:59

Originally Posted by: Online Community Member

...should that not have been checked earlier and he been told about this?

I'm sure he will have had to sign a consent form and it will have been on there and you will have been made aware of all the risks. The problem is that when people have cancer they don't want to listen to warnings; they are too concerned with just getting it out.

Originally Posted by: Online Community Member

...
Also the ED nurse prescribed cialis for erections as far as I am aware that only works if nerves are present. Should she not instead offer muse or somehing like that as a start?
Or do they start with the cheapest option and let the patient get discouraged to go away

I think you are right Cialis only works if nerves are present. A few others have posted about it working unexpectedly so worth a try.

You can be fairly certain they do start with the cheapest and work up. I did read once that as far as dosage is concerned they start at the max and work down to avoid discouraging the patient. I think you will need persistence.

Dave

User

Posted 12 Aug 2022 at 11:33

DW, as a supposedly non nerve sparring patient I was offered the injections and pump at my first ED meeting. I didn't fancy the injections so opted for the muse option, five years later I went onto the injections, they are far more effective and reliable for me. I was having some stirrings a few weeks after surgery so my ED guy prescribed daily 100mg sildenafil.

Obviously the post code lottery again. Never give up and have fun.

Thanks Chris

User

Posted 12 Aug 2022 at 12:34

Originally Posted by: Online Community Member

Hi all, having a Telephone conversation with the urologist 5th Sept.
to get the 1st psa test result and info if any change in staging or Gleason. OH told me that just as he was wheeled into the operating theater he was told they may not be able to do nerve sparing due to space issues.should that not have been checked ealier and he been told about this?

Also the ED nurse prescribed cialis for erections as far as I am aware that only works if nerves are present. Should she not instead offer muse or somehing like that as a start?
Or do they start with the cheapest option and let the patient get discouraged to go away

I think the reference to space would be 'space between the edge of the cancer and the nerve bundles' not 'space in the operating theatre'. I think your first urologist indicated that the op would be unilateral nerve sparing and later in the thread you posted that a urologist had indicated that it may have to be non nerve sparing.

The cialis won't help with recovering erections if he has had all nerve bundles removed but it still helps with general recovery from the op as it encourages oxygenated blood into the pelvic area. Hopefully, the next time you see the ED nurse she will have received his post-op details.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Aug 2022 at 13:06

Hi Lynn, in this case neither is correct. The original urologist said full nerve sparing on the left and they would try to spare some on the right. This was confirmed by the surgeon until the op. The space problem was in his pelvis,

User

Posted 12 Aug 2022 at 13:49

Originally Posted by: Online Community Member

OH told me that just as he was wheeled into the operating theater he was told they may not be able to do nerve sparing due to space issues.should that not have been checked ealier and he been told about this?

Since this may have been a significant factor in treatment choice, I would say that giving this information at that late stage is completely unacceptable.

User

Posted 12 Aug 2022 at 18:06

To say it would have made a difference is a serious understatement. I would have refused to drive him to the hospital especially in view of the fact that the day before he got a text setting up a telephone consultation with Mr x from uclh

User

Posted 12 Aug 2022 at 22:51

Originally Posted by: Online Community Member

I have checked your previous posts - you will find them on page 3 or 4. You posted that one uro said nerve sparing on one side only and the other said it would be non nerve sparing.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Aug 2022 at 23:27

DW his cancer diagnosis started when he went to the GP with ED problems, since then every man and his dog has been poking and cutting his prostate and a few wanted to shoot it with x-rays, and some wanted to freeze it and others wanted to ultrasound it in order to boil it.

I don't think it mattered much how they treated it, a boner was not going to be forth coming at the end.

So now you need to see what fun you can have together with a flaccid penis, and if it ain't much fun you're going to have to think about all the tablets (which won't work) the injections which might work, but will ensure no spontaneity, the pump which will probably just be for comedy value, and eventually after about 7 years of fighting the bureaucracy a penile implant, which probably will work.

At some point you might have to get him involved in the decision process too.

Dave

User

Posted 13 Aug 2022 at 07:27

Regarding the decision process I am more in the nature of a secretary as I leaned type in the distant past. Otherwise pre OP tablets actually worked a treat once somebody actually read the instructions and that is what we both want back.

Yes, he is having orgasm without an erection once I managed to persuade him to try it, but OH wants more and so do I.

As the NHS ED nurse started with a treatment with no chance of success I am going to call the prostate UK specialist nurse and ask for a recommendation for a private ED clinic

User

Posted 13 Aug 2022 at 09:09

You are jumping the gun again; the ED nurse has done nothing to warrant you deciding that she is no good. She has provided a vacuum pump and tablets before you have even had your post-op consultation - I would say that is pretty amazing in comparison to many areas.

I am not sure why you had a problem with her being in her 30s but since he has no nerve bundles, there is a possibility that the vacuum pump will be your best chance of penetrative sex in the future.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Aug 2022 at 16:05

Hi Lynn please accept my apologies for any misunderstandings, but please understand that as a non native English speaker my choice of words may not always reflect my meanings.

OH had RARP 19th May, left hospital. 21st May with a prescription of 4 viagra. TWOC 1st June and left with a prescription of viagra for 3 month to be taken daily.

1st telephone consultation with urologist 18th July, got told all margins negative, doc pleased with progress regarding incontinence I.e down to 1 large pad day

1st meeting with ED nurse 25th July. Very nice young lady. Bit shocked at her archaic record keeping I.e. filing cabinet, folders and hand written notes. As she had arranged the 3 month supply of viagra she was convinced that the surgery was nerve sparing and prescribed extra tadafil? For special occasions

2nd telephone consultation with urologist 5th Sept. about PSA. Questions to ask are Gleason score and staging changed? Is the fact that OH was badly bruised on the left whole side from hip bone to armpit of any significance? Is there anything we need to watch out for?

2nd meeting with ED nurse 25th Sept. The only problem I have with this is that it is 6 weeks away

User

Posted 13 Aug 2022 at 17:53

I had RP one month before your husband. It was also non nerve sparing.

I found Dr Mulhalls book " Saving Your Sex Life, A Guide for Men with Prostate Cancer" useful for understanding the context for various treatments.

Personally I am using daily Sildenafil/Viagra and Caverject injections and I got these prescriptions from my consultant (using Sildenafil on days when not using Caverject). The Sildenafil is a long shot just in case some nerves work. I am still working on the correct dosage for the Caverject - it performs well but with too high a dose it is painful. In the UK you can get Invicorp which many on here say is better.

In the book above it is suggested that blood flow to the penis is key and that the injections are much better than the pump for this.

Edited by member 13 Aug 2022 at 17:55 | Reason: Not specified

User

Posted 13 Aug 2022 at 19:00

The beauty of the pump is that it stretches the tissue and keeps it elastic and costs nothing to you medicine wise. The side effects of viagra and Cialis can be unpleasant. You’re correct in that it doesn’t cause blood flow as such , but it does maintain healthy elastic tissue. Way more than injections as they would have to be so more frequent.
I tried it all literally. Still use Cialis 7 yrs on though incurable. Still wake up with a semi which means it’s working stimulating blood flow to extremities. Still use pump 3 times per week whilst shaving. He still looks great and can be relied upon despite 20 months of HT which is a fine result compared to most men on HT.

Edited by member 13 Aug 2022 at 19:01 | Reason: Not specified

User

Posted 13 Aug 2022 at 21:16

What would I give for a semi :-)

From what I have read in various medical literature the optimal approach is injections (at least 2 per week) combined with Sildenafil. Apparently the reason the VED is suboptimal is that it is recirculated old blood instead of drawing new blood into the penis.

Ref Scardino: “VED’s do not produce an actual physiological erection and therefore don’t promote the circulation of fresh, oxygenated blood. Therefore, they may not help avoid fibrosis [scarring] after radical prostatectomy.”

That said, based on your own experience probably worthwhile sticking with the pump for exercise purposes when not using the injections. Also some folks may not want to or cannot use injections in which case the pump is going to be better than nothing.

User

Posted 13 Aug 2022 at 22:33

Originally Posted by: Online Community Member

I had RP one month before your husband. It was also non nerve sparing.

I found Dr Mulhalls book " Saving Your Sex Life, A Guide for Men with Prostate Cancer" useful for understanding the context for various treatments.

In the book above it is suggested that blood flow to the penis is key and that the injections are much better than the pump for this.

J, I looked for links to Dr M and came across the following you tube video, interesting his comments on injections being better than the pimp and the reasons why. The video is a few years old so not sure if it is still the current thinking. The only downside is he suggests using the injections twice a week and I think most of us only get a prescription for one a week. Some other interesting points raised about having ADT. Hope your recovery continues.

https://youtu.be/4ELsojPFNV8

Thanks Chris

Edited by member 13 Aug 2022 at 22:35 | Reason: Not specified

User

Posted 14 Aug 2022 at 12:59

"Bit shocked at her archaic record keeping I.e. filing cabinet, folders and hand written notes."

That is the decision of her department, she has no control over it. I have just finished an enquiry involving 5 NHS trusts and 2 CCGs. Even within one NHS Trust, departments used different electronic systems that couldn't communicate with each other and 2 teams used paper records. The GP used a system that only one other department shared.

"As she had arranged the 3 month supply of viagra she was convinced that the surgery was nerve sparing and prescribed extra tadafil?"

The surgeon arranged the viagra, not the nurse? I can see why the nurse made that assumption - hopefully, you will have clarity by the time you see her again in September.

Edited by member 14 Aug 2022 at 13:00 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Aug 2022 at 17:46

Hi Lynn, you are correct that the doctor arranged for the supply of Viagra and OH is going to ask about that.

Do different doctors/health authorities interpret QoL differently or is that also depending on the age of the patient? Reason I am asking is the husband of a friend had the op 3 years ago at with a different health authority and even though his cancer had started to break out of the capsule and they deliberately left some nerves knowing there would be positive margins. His age at the time was 55 I.e 13 years younger than OH.

User

Posted 14 Aug 2022 at 18:11

Sounds like an urban myth - I don't believe a respectable surgeon would knowingly leave behind some cancer. He would risk being hauled up before the GMC and losing his licence. The consent form for RP always says that the nerves may have to be removed if the surgeon gets in there and discovers the cancer is more extensive than expected.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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